All Children's Hospital Foundation

"OUR LOCAL HOSPITAL told us before he was born that Cody might not survive. They don't specialize in heart defects, so the outlook they described was pretty grim," Courtney explains. Courtney and her husband, Shawn, learned about Johns Hopkins All Children's Hospital. After meeting with their cardiology team, they decided to give birth in St. Petersburg so they could be close to the expert medical care their baby needed. "Cody was born with hypoplastic left heart syndrome (HLHS), which means the left side of his heart was underdeveloped and couldn't deliver blood and oxygen normally," explains Gary Stapleton, M.D., chief of pediatric cardiology, interim co- director of the Johns Hopkins All Children's Heart Institute and medical director of the cardiac catheterization lab at the institute. Cody underwent three operations—the first one when he was just eight days old—to make the right side of the heart do the work for both sides. The first surgery was the Norwood procedure, for which the hospital has a 100 percent success rate from 2014 through the present. "As one of the leading heart programs in the country, we are fortunate to have had great success and excellent outcomes with these procedures and the follow-up care children like Cody need," Stapleton says. Those three surgeries and frequent follow-up evaluations took several years and a lot of miles traveling back and forth on I-75 between the hospital and the family's home in Ft. Myers. Today, Cody is a healthy 8-year-old. He plays T-ball and has joined the Cub Scouts. "He is doing very well," Courtney says with a mixture of pride and relief. There is a small chance Cody will need another procedure as he grows, so the family still returns to Johns Hopkins All Children's every six months for a follow-up exam with Stapleton. "Cody is very social, and he loves to go to the hospital," says Courtney. "Dr. Stapleton knows my kids like his own. We can call him for anything, and he knows the answers. As soon as we met him, we knew he was the guy. We travel two hours to get to the hospital, but it's worth it. We're comfortable there. It was our second home for so long." ANOTHER CHILD WITH HEART PROBLEMS Cody wasn't the only reason the hospital became a routine stop for Courtney's family. When a child is born with HLHS, the chances go up significantly that later siblings may be born with congenital heart disease. "We were trying to have another child, but I was very afraid we would go through the same thing," Courtney says. "We talked to Dr. Stapleton and watched the second pregnancy carefully." "Whatever the family's decision, we were there for them every step of the way, but we wanted to make sure they understood the risks," Stapleton explains. A fetal echocardiogram performed during the pregnancy revealed that the baby also had left-sided heart defects, but not nearly as complex as Cody's. Instead, unborn Mason had a coarctation—a narrowing of the aorta. "He just had one procedure and was home within 10 days," she recalls. "There was no need for cardiac bypass like Cody required. They went in through the side of the chest and did the repair." Mason is now four years old and healthy. A NEW HOSPITAL In between Courtney's two births, Johns Hopkins All Children's moved into a new state-of-the-art building, where Mason had his surgery. "The differences were amazing," Courtney says. "In the old hospital, the rooms were much smaller, and we were often asked to Johns Hopkins All Children's Hospital is one of the top children's hospitals in the country for pediatric cardiology and cardiac surgery for the second year in a row, according to U.S. News & World Report. The Heart of the Matter It is often in the worst possible moment that a parent realizes not every hospital can help their child. For Courtney, pregnant and living in a small town, the news that her baby had only half a heart was devastating. Gary Stapleton, M.D. 4 All Children's Hospital Foundation | www.givetoallkids.org ■ Treatment

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